About Moi

I was born in June 1981, I'm a hearing impaired paper-crafter who loves all things crafty. I sew, although I'm still very much a novice at sewing. I bake and cook hopefully all kinds of delicious treats. I have a huge passion for photography and the camera {yes I'm old school I still use an actual camera} is never far from me. I also love creative writing from making up sentiments/verses for my cards and other paper-craft projects to penning some fiction. I am an avid reader and I may even throw in some book reviews on here too!

Monday, 26 June 2017

I've struggled for the last couple of weeks. I needed a change, well a break really from things that were going wrong, everything keeps breaking down or needs replacing and I've just struggled a little to keep on top of things. I've also been trying to deal with the emotional side of not returning to lipreading next term. They have changed the location and it's just too far and would cost too much for me to get there. I'm going to miss the people a lot and I'm scared that the confidence I've found in the last term will be lost. This morning despite everything that's been going on I was desperate for a change and so we went to Exmouth just for an hour. Granted a bit of a trek just for an hour but it helped. I was very well behaved with the camera and these are the only photos I took.

Tuesday, 20 June 2017

There are a lot of "hello" notelet cards to share with you today. I fell in love with both the images and fascinating facts about places around the world so I've continued to use those images for these cards as well as some others.

Saturday, 17 June 2017

Welcome to my final destination on this world tour of Cultures. I'm stopping off in Australia and I'm sad that this journey has come to an end. I've chosen to look at the Culture of the Aboriginal Australians and it has taught me that:

Religion involves Dream Time, Totem Poles, Ghosts of the Dead and Spirits who control the natural world

Aboriginals are famous across the world for their art

Walpiri is an Aboriginal Language

Dyribal is an almost extinct Language {this horrifies me, all language is precious}

Tuesday, 13 June 2017

When
I saw the photo inspiration I had an instant thought of snow leopards
in the mountainous background. I was drawn to the colour of the
mountain and I couldn’t let go of it. Then recently when printing
images to use on cards I came across this leopard face and knew I was
going to turn it into a snow leopard. What I didn’t know was how I
was going to make this creation or what it would turn out like. As
the weeks passed I still couldn’t get to grips with what I was going
to do despite having coloured it.

Then
it came to me, I’ve struggled recently with a long term health
issue and although I’m good at dismissing it mainly because for
over 30 years there was no formal diagnosis and no treatment but also
because I was and am scared of the reaction I got and will get from others. In a fit of bravery,
believe me it was a fit I don’t do this often if ever and I surely
don’t think it will do any lasting good I
tweeted something that was on my mind,
However, I am going to paste that tweet here because it is the
foundation of the piece I made and it’s inspiration.“For 35 years I’ve been judged, bullied and had people criticise
my life because of a hereditary
genetic defect,
it NEVER gets any easier!”

I
usually take a very deep breath, say oh it’s nothing serious just
an infection or just a bad day or I’m okay but it’s not and never
will be. I need the courage of the snow leopard to draw upon to help
me say this, to release it into the world so judgement can be passed
on me once more but this time those making judgement will at least
have all the facts. I should probably have timed this post for #DeafAwarenessWeek but I wasn't quite ready psychologically for that.

I
have a hereditary
genetic defect condition
called Prearricular Sinus. The malformations result from the
incomplete fusion of two of the six hillocks that arise from the
first and second branchial arches. As
the precursor to the name states it’s hereditary and genetic
meaning it is passed on although it can occur randomly almost all
known cases are passed on in the genes. Now
before I digress and bore you all to death I’ll share my piece for
the inspired by a photo challenge at : Ikes Art Challenges This way you needn't read the rest of the post!

Now
to the facts:

They
can be singular or bilateral although bilateral are the rarest. The
incidence of this condition is very low with the highest around 4-10%
in Asia
and Africa. Of course this means the condition is mostly found in
those of Asian, African or African American decent with only 0.0-0.6%
of whites having the condition and the majority of those have a
singular prearricular sinus, less
than 0.1% have bilateral prearricular sinus.
I have bilateral prearricular sinuses. As
part of this condition there are associated conditions including:
Subcondylar impaction of the third molar, renal malformations,
hearing loss, branchiogenic fistulas, commisural lip pits and
external ear anomalies, facial and ear bone deformations. It has
recently been linked with: Cleft
palate, spina bifida, imperforate anus, renal hypoplasia or renal
agenesis, reduplication of the duodenum, undescended testes, and
umbilical hernias are reported associations.

What
this means for me is, although at the moment a dentist has not
confirmed subcondylar impaction I do have Temporomandibular joint
dysfunction. A combination of swelling from my ear, pharynx,
Eustachian
tube, throat,
sinuses and other areas along with clenching my jaw to help deal with
pain in my ear means my jaw dislocates when I yawn, eat, drink,
smile, or have an excessive amount of fluid in my ears.

I
have a hearing loss, this can be conductive or sensorineural. I have
the later from birth. I have always been deaf and it will get worse as time
goes on. The location and inflamation of the prearricular sinus
coupled with frequent ear canal and inner ear infections mean hearing
aids would exacerbate the infections. Until 18months ago the infections occurred on a monthly basis and at one point in my life I was taking
antibiotics for 18months because nothing would clear the infection.
As
strange as it seem to many I cannot bear the thought of returning to
constant infections so hearing aids are not advised.

I
have facial anomalies, my nose is broken for want of a better word,
my sinuses don’t work and cannot drain so a cold is almost
impossible. That’s not to say I don’t pick up in the viral
infection that causes the cold I do, I just don’t present with cold
like symptoms. The fluid that drains through the nose with a cold or
creates a stuffy nose will build up and block the eustachian tube and
as it increases in quantity it pushes through into the pharynx making
it so swollen I cannot swallow without pain. This drains into my
throat and more often than not creates a throat infection, as it
passes down my throat it has two choices, my stomach or my lungs.
Most often it’s my lungs and I get frequent chest infections that
are exacerbated by asthma. The problems with my sinuses means my
face regularly swells unevenly making it look like I have taken a blow
to the eye without the bruising. The
swelling and infections around the sinuses, pharynx and jaw mean that
on “bad” days I cannot swallow water let alone chew and swallow
food. This can ease with a wheat bag in hours or last for days. I
am lucky until the date of this post thriving has not been an issue
but it could and is likely to become an issue if the swelling and
infections are prolonged.

I
have a lot of ear bone anomalies. I
have Eustachian Tube Dysfunction, which means the tube does not drain
properly, I cannot equalise pressure in my ears and I frequently have
perforated {burst} ear drums. The Eustachian tube dysfunction means
that the fluid in it frequently becomes thick, impossible to shift
and infected. The balance bones in my ears are damaged, this means
my balance is terrible. Over the years my brain has learned to
accommodate, however, now on “bad” days my brain cannot cope.
This tends to be when I’m physically and or mentally tired. Then I
have medication to help. It does come with an array of symptoms
though, I tend to wobble as though I’m drunk, find it hard to
focus, headaches, irritability and the worse thing for me is the
injuries
because of falling when stood on a perfectly flat surface.
I am VERY lucky that if I make sure I rest and get enough sleep this
part of the condition is very well managed.

Eyes,
the membrane on the face surrounds, nose and eyes and infections can
easily pass onto the eyes. Sight can be affected and I have yearly
tests to ensure there are no problems and make sure I have up-to-date
prescriptions for glasses.Regular ear infections, I'm grateful they are now reduced to once every month or even few months, they were pretty much constant, but with a now well manged set of medication ear infections are easier to treat and less frequent.

These
are all alongside the prearricular sinus. However that in itself
brings problems. Mine
fluctuates in size {another issue that would complicate the use of hearing aids} and although I am currently asymptomatic {without
symptoms} it is frequently infected. I can still smell the odorous
pus, remember the words used to describe me because of the smell, the
shape, size and colour of my ears. I’m sure I could dig out photos
and scare you all and make you vomit but I won’t. The point is for
years as a child it was undiagnosed and even if it had been it would
not have changed other peoples opinion of me, the smell from my ears,
the shape, size and deformation of my ears or the fact I couldn’t
always hear and understand what they said let alone why they said it.
The
appearance and smell meant that children and adults alike don’t get
to know “me” they just note the smell and appearance of my ears
and judge the kind of person {Weird, strange, unnatural, strange, stupid, freak are
all words I have heard in fact some of the nicer words I’ve heard}
I am from that.

Little
is known about prearricular sinus, but I have noted mine are
exacerbated and more prone to infections if I consume potatoes. I
can have sweet potato or potato in moderation but not often. I
have to fight for treatment of infections because most ear infections
or even throat infections clear without the need for treatment, mine
don’t. Not every GP has heard of my condition and will not re-knew
long term medications because they are strong and expensive and if
you are unaware of the condition you are unable to see the benefits
of even an extra day or two between infections. Even thinking of the
pain of infections makes me actually cry, the smell I’m am
accustomed too and rarely notice but the pain is strong. I have
asthma and cannot take Ibeuprofen and prefer not to take paracetamol
or other analgesic drugs unless I have no alternative. This means I
am often in pain and trying to ignore it. This condition really does
make life difficult but not in a manner that is explainable because
it’s something that most people have not heard of and therefore it
appears as though I am making this up just to be difficult {yes I
have actually been told that in the past} and for attention. It
is also how life will always be...always making sure I am not trying to make what this means for me to be worse than something is for anyone else because there is no way it can be, a struggle, a battle, what others endure will always be worse, it can never be
compared to something as trivial as this,
always trying not to let emotion or other peoples judgement on me get
the better of me. I need to balance that tough courageous I don't
care animal attitude with trying to trust people, to let them in and
not spend the entire time waiting for them to judge me because of
this condition. Trusting and
not fearing the reaction
is the hardest thing of all which is why i have chosen to put this
out there via my blog with a limited audience so that it can help me
garner the courage to tell others maybe even in person one day.

Finally, before the laptop goes bang from my tears, I want to say a huge THANK YOU to Ike, not just for the stunning
images she designs but also for setting the challenges that not only
inspire me but allow me to create from heart and soul regardless of
where that make take my craft and for without even realising it supporting me through the use of her images on a painful yet essential and fulfilling journey.

Thank you

Thank you for viewing my blog and to those who comment a special Thank You. I appreciate that your time is valuable and the fact you have used some of that to leave a comment here means a lot to me. Thank you